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Ostomy life

(63 Posts)
baubles Mon 18-Jul-22 15:44:08

I’m wondering if anyone with experience of living with an ileostomy bag can give me some advice.

It’s eight weeks since I had emergency life saving surgery and woke up a couple of days later to discover that I have a permanent ileostomy.

The hospital dietitian gave me information on what I could and couldn’t eat ie absolutely nothing with skin or pips, no mushrooms of any kind and no raw vegetables. Now that the sun is shining I’m craving a big bowl of salad filled with lovely onions, peppers, tomatoes and cucumber.

I’m getting a little bit tired of well cooked veg!

Anyone with any experience?

Auntieflo Mon 18-Jul-22 17:28:25

baubles, sorry but I have no advice to give, but am hoping someone will come along soon and help.
It must be awful craving a food and not being able to eat it.

Smileless2012 Mon 18-Jul-22 17:41:58

My mum had one baubles and she was advised against eating the things you have mentioned. I know this is fiddly and time consuming, but you can remove the skin and seeds from tomatoes and do the same with peppers.

I hope you don't mind my mentioning this, but trapped wind was a problem for mum so as much as she loved spring onions she had to avoid them and also limit the amount of cooked onions.

I wish you a speedy recovery and all the best for the future. Take careflowers.

NotSpaghetti Mon 18-Jul-22 17:48:12

My mum had one too.
I know she peeled and seeded tomatoes but she still enjoyed them.
I think maybe you could call the nurse in the stoma team and ask for some ideas?
You could also look online as there's support groups and lots of advice there.

I don't have a lot I can add, sorry, but do wish you well.
Speedy recovery.
X

TopsyIrene06 Mon 18-Jul-22 18:23:27

I've sent you a pm.

Franbern Mon 18-Jul-22 19:03:32

Had my permanent ileostomy back in 1990. So loads of experience.

I have a very substantial salad as my man most days. including tomatoes, etc. They have never caused me any problems. You really do need to experiment carefully with different foods. I cannot eat the skin of a baked potatoes and always peel apples.

Your operation has given you your life back, do not be afraid to live it to the full. Like with anything else, so people react more to some foods than other do. Only careful experimentation will show which you are able to eat.

If you do feel that a blockage is occurring, then learn the very early symptoms (mine, strangely enough is feeling hungry when I have just eaten.). Very quickly that will lead into a lump I can feel, and then what can only described as something like labour pains. Very debilitating. I find that heat is what sorts this out, a hot water bottle on my tummy, drinking a mug of the hottest water I can manage. Sitting in a hot bath. Usually, that sorts itself out within a couple of hours.

Luckygirl3 Mon 18-Jul-22 19:16:54

I have no personal experience but a close friend has lived with one for many years and it does not stand in her way one bit - she lives life to the full.

I am glad that the emergency surgery saved your life and hope that your stoma will be no problem to you. The specialist stoma nurses will truly be your friend.

baubles Mon 18-Jul-22 19:38:35

Thanks for the replies and PMs, I’m truly grateful.

How interesting Franbern, I think I’ll have to start experimenting.
I did think I had a blockage a couple of weeks ago and spent a few days in back hospital, however it turned out that adhesions were the culprit and not anything I’d eaten.

Ah the wind Smileless grin. Yes I’ve discovered that broccoli makes my bag fill with gas alarmingly quickly, it resembles a zeppelin straining to escape its tethers.

Thank you all for your good wishes.

StarDreamer Mon 18-Jul-22 19:53:53

LINK > forum.iasupport.org/

ixion Mon 18-Jul-22 20:02:02

I do hope that Baubles ' Specialist Stoma nurse and surgical team have already given all the help she may need and pointed her to what is out there.

Treebee Mon 18-Jul-22 20:02:47

I’ve read this to my husband who had an ileostomy in April. His comment is that it’s early days. It takes time for your body to acclimatise and everyone is different. He suggests keeping a food diary so you can note the effects.
He recommends that if you feel tired, have a lack of appetite or get cramps, do see a medical professional. He had problems last month due to magnesium and calcium deficiency.
Food wise, he’s been eating our home grown courgettes with no problems. I boil or roast or fry them. Carrots are OK too though he hasn’t eaten them raw.
The best of luck, from both of us.

StarDreamer Mon 18-Jul-22 20:10:23

ixion

I do hope that Baubles ' Specialist Stoma nurse and surgical team have already given all the help she may need and pointed her to what is out there.

Are you implying that I should not have posted that link?

Marydoll Mon 18-Jul-22 20:20:20

StarDreamer

ixion

I do hope that Baubles ' Specialist Stoma nurse and surgical team have already given all the help she may need and pointed her to what is out there.

Are you implying that I should not have posted that link?

Baubles, this is not a secure site. I wouldn't go there. I'm sure your clinicians and fellow grans, who have experience of this, can help you. will be able to help you.

StarDreamer Mon 18-Jul-22 20:26:48

How do you mean that it is not a secure site?

Smileless2012 Mon 18-Jul-22 20:31:17

You have a great positive attitude Baubles, good for you.

My mum was encouraged to see her ileostomy bag as a friend as without the surgery she wouldn't have survived. She called hers Stella (Stella the stoma)smile.

ixion Mon 18-Jul-22 20:32:48

Baubles, this is not a secure site. I wouldn't go there. I'm sure your clinicians and fellow grans, who have experience of ^this, can help you. will be able to help you.
Marydoll 20:20:20

Wow, just goes to show!
Thank you!

Smileless2012 Mon 18-Jul-22 20:33:01

Do you mean GN isn't a secure site or the link to the site StarDreamer provided isn't secure Marydoll?

StarDreamer Mon 18-Jul-22 20:36:01

No it does not.

A picture posted with no details of what was tried on which browser.

{{https://iasupport.org/]]

StarDreamer Mon 18-Jul-22 20:36:53

That link should be

iasupport.org/

Marydoll Mon 18-Jul-22 21:06:39

For SD

When I was teaching IT safety to both pupils and staff in our LA, the advice from the director of IT in our LA, was never to use sites which were not supported by HTTPS, because they are not guaranteed to be secure.
That is all I am saying.

SD, I understand your intentions were good, but I do not intend to get into a lengthy discussion with you about this.
I shall continue to be wary of unsupported sites, such as the one you gave the link to.

StarDreamer Tue 19-Jul-22 07:32:37

I have now found that although neither Google Chrome nor Microsoft Edge displayed a panel such as the one that Marydoll posted, they did each notify Not secure but only in small type to the left of the web address of the page. I had not noticed that.

The issue appears to be that the Not secure message does not necessarily mean that there is anything wrong with the information in the website, it appears to refer to the fact that the information flow between the person using the website and the computer that hosts the website is unencrypted, so someone could be eavesdropping on the information and recording it and using it for some purpose.

So if, for example, it is a website such as a bank and the user was using internet banking and the site was not https, this could be a big security risk.

It is interesting that the website of the Ileostomy Association itself is https but upon entering the forum from that website, the forum is http and thus flagged as not secure. I don't know why, maybe the software that supports the forum does not have https capability, or some other reason.

It seems to me that the situation is similar to someone in everyday life potentially overhearing a conversation - if the discussion is on private matters then a big issue, but if the conversation is something like asking for how much a can of baked beans costs, then not so bad, thiugh the person does learn that the person is interested in knowing the cost of a can of baked beans.

Anyway, I just wanted to post this note for completeness.

harrigran Tue 19-Jul-22 08:55:54

I had problems with raw fruit so resorted to buying baby food such as stewed apple and pears, it is easily digested.
Six years on I manage a fairly normal diet but my mantra is everything in moderation. Ballooning bags can be a bit of a nightmare but like everything else we learn to cope.

Franbern Tue 19-Jul-22 13:03:20

when I first started having regular blockages, I was taken back to hospital each time. Eventually, I was checked out and told that adhesions to the operating areas were the problem. Then told, they could do a further operation and there was a fifty percent chance of an improvement and a fifty percent chance of things getting worse!!!

Decided at that point NOT to have any operation but to work out my own management plan.

This has worked very well for the past twenty plus years. Learn to recognise whatever is your early warning of a blockage. Never ignore that early warning and treat immediately.

In this way, I can now usually, sort out a blockage within three to four hours. Blockages in a stoma are very painful, I can only like it to being in labour, - but without the wonderful end to that (I have given birth to five babies, two of them at the same time).

Do talk to your ostomy nurse, also to the ostomy nurse at the company who is supplying your apparatus. Also, join up with people at your local Ia group, and, above all, take time. Your body has undergone a very major trauma - it will probably have saved your life - but it can take a long time to fully adjust.

Carry on leading a perfectly normal life -there is no reason for you not to do anything you wish with a stoma

TopsyIrene06 Tue 19-Jul-22 13:34:30

Marydoll. Thank you so much for explaining why we should be guarded when visiting unsupported sites. Very helpful.

pensionpat Tue 19-Jul-22 13:46:11

I suspect that individuals differ greatly in their life with stoma. My husband has had a colostomy and a urostomy for 17 years. He was given no advice as to what foods to avoid and once he was used to the mechanics of everything he has continued with his life and eats and drinks anything that he wants. You will become your own expert Baubles. Good luck and isn’t modern medicine wonderful!